At the age of 10 years old, I came down with a very intense flu-like virus and although the fever subsided after a couple of weeks, I was left with persistent fatigue. I remember initially being very scared. Not knowing what was wrong with me and whether I would ever recover was terrifying, not just to myself but also to my parents.
I remember being tested for various things, including glandular fever and when these results came back negative, my GP suspected I had M.E./CFS. This was later confirmed after I was referred to my paediatrician. My diagnosis of M.E. came as a bittersweet relief – there was nothing that could be done to ‘cure’ me, but at least I could put a name to what was making me feel so terrible.
Overall, my symptoms were not too severe during the first couple of years. My illness relapsed and remitted, but I was able to finish primary school and complete my first year of secondary school (with increasingly frequent periods of absence).
Severe relapse
At the age of 12, however, my life altered substantially. For months, my M.E. relapsed so badly that I was unable to walk and feed myself. I remained in my bed for a significant proportion of that year, exhausted, in a lot of pain from my muscles and joints and feeling so sick that I had almost no appetite. My parents had to feed and basically do everything else for me, as I was unable to do them by myself. My migraines were so severe - often being triggered by light, certain smells and even the quietest sounds – that my room had to be pitch-black and I was unable to receive visitors. If I am being honest, I have very little recollection of this period of my life. I think in part because most of my days were essentially the same, but also because I still find them traumatic to focus on.
Luckily, things did eventually start to change, and I got to a point where I could receive home-schooling. Initially this took the form of one to two hours of tuition a week (if I could manage that) and I gradually built up from there. My family and I decided (with my doctor’s approval) that I should aim to take my GCSEs as and when I could from home; utilising my energy when it was available to me. This enabled me to attain my GCSEs between the ages of 13 and 16. After years of battling with my M.E. and the cycles of illness gradually getting better, I became determined to make a change and return to a new school to undertake my A-levels. By this point I aspired to become a doctor and I wanted to do everything I could to ensure that I got there.
This was by no means an easy task and to this day, has been one of the most challenging periods of my life. In addition to my physical limitations – my M.E. still dictating if and when I could attend school – I had to face my psychological ones. Like many people with chronic illnesses, my concentration and mental health had also suffered because of my condition and I struggled with depression and anxiety for what would be years. Towards the later stages of my schooling, these became as, if not more, limiting than my M.E.
Supportive friends
Fortunately, I met some wonderful people during sixth form who became incredibly supportive friends (and still are to this day!). With their and my then-boyfriend’s additional help, I managed to achieve what I had set out to do. My school were also very understanding about my illness and supported me when I had to miss days (sometimes weeks) of education. Overall, deciding to face my fears and push myself to return to school has been one of the most rewarding things that I have ever done.
My life has changed drastically in the last 13 years. My M.E. seems to only continue to improve as the years progress and now, I am only affected by the deconditioning that years of reduced activity has left me with. I am no longer at the mercy of a relapsing and remitting fatigue that is completely out of my control. In addition, my mental health has massively recovered and my concentration has returned. I find it exceedingly difficult to look back and see myself as the same person who suffered so much as a teenager. This disconnect can sometimes be problematic, as I do not always appreciate what I have had to overcome to be where I am now, but I am incredibly grateful that my life has turned out so fortunately.
Today, I am in my sixth and final year of medical school and intend to continue my studies, with the eventual aim of becoming a surgeon. I hope to apply the empathy I have acquired through having a chronic illness myself, to the interactions I have with my patients. I am also committed to remaining an advocate for M.E. within the medical profession and to continue to politely challenge any ignorant views that are held by a (thankfully) growing minority of professionals.
Facing stigma
Ultimately, suffering from M.E. can have stigma attached to it. Different people will always react in various ways. When I first became ill, other children and adults in my area were affected at a similar time or had been the previous year. This meant that some people in my community were already aware of, or had been affected by this illness and were able to understand and provide my parents with advice.
Unfortunately, there will also always be some individuals who are unable to comprehend how M.E. affects people and in extreme cases may not believe that you are genuinely ill. For the most part, I find that people are supportive once you have explained your situation to them. If this is not the case, then all I can recommend is that you try your best to ignore them. Although, I appreciate that this can be incredibly infuriating. I think it is important to remember that no one knows what is happening to you and your body better than yourself and you should not let others make you second-guess your own experiences.
Personally, I have also faced a lot of people who doubted that I could achieve what I have been able to, whether this was through genuine, well-meaning concern, or something else. It is paramount to look after yourself and your health, but I also found it important to recognise that over the years I had learned when I could challenge myself and when I needed to fall back and recuperate. Ultimately, I knew my condition the best and needed to listen to what my body was telling me at that specific time.
Why am I writing this?
Charities like Action for M.E. were a great comfort for me during the first couple of years of my illness. They provided me with a lot of information about M.E. and reassured me that my symptoms were common to many patients. Reading multiple stories from other people made me feel like I was not alone and provided me with useful tips for managing these symptoms.
These charities were also a massive comfort to my parents, who have in some ways been affected more by my M.E. than I have. I cannot imagine how hard it must have been for them to watch their only child cope with such a debilitating and unpredictable illness, let alone while they continued to be so strong and to care for me. I will always be endlessly thankful to them.
I would also like to take the time to thank my doctors, who were wonderful and showed me nothing but respect and empathy. Finally, I need to thank my best friend, whom I met aged 13 over the internet, while we were both at home suffering with M.E. She has been my rock throughout everything, and I do not know where I would be today without her.
I cannot overstate my acknowledgement of how privileged and fortunate I have been with my progress. Illness affects everyone differently and I by no means expect somebody else to end up in the exact same place that I have managed to. By sharing my story, I just hope that another person or family, who is in the same position that I was all those years ago might regain some hope for their own futures.
